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EDS/HSD, and MCAS: How They're Connected and What You Can Do

Writer's picture: Ines IllipseInes Illipse

Updated: Nov 8, 2024



Living with Ehlers-Danlos Syndrome (EDS) or Hypermobility Spectrum Disorder (HSD) often feels like trying to piece together a complicated puzzle. If that weren’t enough, many people with these conditions also have to deal with something called Mast Cell Activation Syndrome (MCAS). You may have noticed it too—random allergic reactions, constant sinus issues, unexplained fatigue. But what’s the link between these conditions, and how do they all affect one another? Let’s break it down.


What is MCAS?

Mast Cell Activation Syndrome (MCAS) is essentially when your body’s mast cells, a type of immune cell, go into overdrive. Normally, these cells are your frontline defense, releasing chemicals like histamine to fight off infections or injuries. But in people with MCAS, these mast cells misfire, releasing too many chemicals without a real threat, leading to widespread and sometimes confusing symptoms.


The EDS/HSD and MCAS Connection


The exact relationship between EDS, HSD, and MCAS is still being researched, but it’s clear that these conditions frequently co-occur. A significant percentage of people with EDS or HSD also report symptoms consistent with MCAS, suggesting a strong correlation. Here’s how they are thought to be connected:


  1. Genetic Overlap: Many researchers believe there may be a genetic predisposition that links connective tissue disorders like EDS and HSD with immune dysregulation seen in MCAS. These conditions could share common genetic mutations affecting tissue structure and immune cell behaviour.


  2. Immune System Involvement: EDS and HSD are primarily connective tissue disorders, but connective tissues are found throughout the body, including in the skin, blood vessels, and organs. Since mast cells reside in these tissues, it’s possible that the abnormal connective tissue environment in EDS/HSD contributes to improper mast cell activation, triggering the symptoms of MCAS.


  3. Inflammation and Tissue Instability: The chronic inflammation and tissue instability caused by hypermobility in EDS/HSD may create an environment that "activates" mast cells more easily. This could explain why people with these conditions often experience symptoms like allergies, skin rashes, and digestive issues—all of which are linked to mast cell activity.


  4. Nervous System Sensitization: Both EDS/HSD and MCAS are associated with autonomic nervous system dysregulation (commonly known as dysautonomia). For example, Postural Orthostatic Tachycardia Syndrome (POTS) is another comorbidity that frequently overlaps with EDS, HSD, and MCAS, highlighting how these disorders are intertwined. The nervous system’s hypersensitivity could contribute to both mast cell overactivity and the chronic pain experienced in EDS and HSD.



Common Symptoms of MCAS in People with EDS/HSD


Everyone experiences MCAS a little differently, but here are some of the most common symptoms you might recognize:


  1. Allergic Reactions: Do you find yourself dealing with random allergic reactions? Maybe hives, itching, or swelling after eating certain foods or taking medications? These allergic-like reactions are a hallmark of MCAS.


  2. Sinus Problems: Constant sinusitis or congestion is another symptom that’s often overlooked. For many people with MCAS, stuffy noses, sneezing, or post-nasal drip are ongoing issues—sometimes without any obvious trigger.


  3. Digestive Troubles: Bloating, diarrhea, acid reflux, or food intolerances are common with MCAS. It can feel like your gut is always "on alert."


  4. Heat Intolerance and Flushing: Do you find yourself overheating easily or experiencing random bouts of flushing? This can be another way MCAS manifests.


  5. Fatigue and Brain Fog: The mental toll can be just as tough—chronic fatigue and that "foggy" feeling where it’s hard to focus or think clearly.


  6. Breathing Difficulties: Shortness of breath, wheezing, or chest tightness can feel similar to asthma but could actually be related to mast cell activation in the respiratory system.


Managing MCAS with EDS/HSD


Tackling MCAS on top of EDS/HSD may feel overwhelming, but there are ways to manage both conditions together. Here’s what’s helped many people find some relief:


  1. Identify Triggers: First things first—figuring out your triggers is key. These can include foods (like dairy, gluten, or fermented products), environmental allergens, stress, or even temperature changes. Keeping a symptom diary can help you identify patterns.


  2. Medication Management: Antihistamines H1 and H2 blockers (like cetirizine and famotidine) can be game changers when it comes to calming down those mast cells. Mast cell stabilizers, and other medications such as ketotifen, cromolyn sodium, or leukotriene inhibitors are often prescribed to control MCAS symptoms. Some people find that adding in supplements like Vitamin C and quercetin—both natural mast cell stabilizers—can also make a big difference. Always consult with your doctor to find the right balance.


  3. Low-Histamine Diet: Since histamine is the main culprit, sticking to a low-histamine diet can help minimize symptoms. This means cutting back on high-histamine foods like aged cheeses, fermented products, alcohol, and certain fruits and veggies. Many people see a significant improvement controlling their flares by making dietary changes. It is important to note that it is not recommended to be on this diet as a long term solution.


  4. Support Gut Health: MCAS often comes with digestive issues, so paying attention to your gut is crucial. Probiotics, digestive enzymes, or cutting out problematic foods like gluten or dairy can help reduce symptoms. Focusing on anti-inflammatory foods can also support gut health.


  5. Stress Management: It’s no secret that stress can set off a flare. Engaging your parasympathetic nervous system—the body’s “rest and digest” mode—can help reduce overall inflammation and mast cell activation. ParaMotion exercise programs can be powerful tools in managing both stress and symptoms since it thoroughly addresses the parasympathetic system.


  6. Move Smart: Movement is critical, but when living with MCAS, it’s important to listen to your body. Low-impact activities like swimming, walking, or tailored exercises that focus on gentle mobility as the ones we offer at ParaMotion can keep you active without overwhelming your system. Finding a balance between rest and movement is key.


A Whole-Body Approach to Managing EDS/HSD and MCAS


Living with EDS, HSD, and MCAS can be incredibly challenging, but understanding the connection between these conditions can make a huge difference in how you approach your care. Since MCAS affects multiple systems in the body, a whole-body approach that addresses not only movement and pain but also immune health, nutrition, and stress is essential.

At ParaMotion, we believe that managing conditions like EDS and MCAS means considering all aspects of your health. Through personalized movement therapy, stress reduction techniques, and practical lifestyle adjustments, you can find relief and take back control over your body.


Conclusion: Moving Forward, One Step at a Time


If you’ve been feeling overwhelmed by the complexity of managing EDS/HSD and MCAS, you’re not alone. These conditions may present a tough combination, but with the right strategies and support, it’s possible to reduce symptoms, increase your quality of life, and regain a sense of balance.


We’re here to guide you through it. If you’re ready to explore tailored solutions that address your unique needs, reach out to us at ParaMotion today. Let’s take the first step toward helping you thrive with EDS and MCAS—together.

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